New Data Reveals Our Nation is Neglecting People With Intellectual and Developmental Disabilities

Survey findings from human rights organization, The Arc, reveal nation’s efforts fail to provide fundamentals for individuals and families

WASHINGTON, D.C. (June 14, 2011) – Fifty years ago, President Kennedy called on the nation to bring people living with intellectual and developmental disabilities (I/DD) “out of the shadows,” to give them opportunities to lead productive, quality lives. Sadly, new data released today from The Arc’s Families and Individual Needs for Disability Support (FINDS) survey shows efforts have plateaued and not nearly enough progress has been made to create these opportunities. While budget cuts and economic strain have hurt all Americans, the 7 million living with I/DD and their families are among the hardest hit, with access to needed services drastically reduced.  In fact, 62 percent of caregivers reported a decrease in services for their family member with a disability.  Meanwhile, budget proposals in Congress threaten to dismantle Medicaid, making it even harder for people with I/DD and their families to achieve.

The Arc, the nation’s largest and oldest human rights organization for the I/DD community serving more than a million individuals and their families, conducted a national survey of nearly 5,000 respondents on educational, housing, employment and support needs.  The results of this landmark survey are being released in a report today, “Still in the Shadows with Their Future Uncertain.”

According to the FINDS survey, one-third of parents and caregivers (potentially 1 million families) reported that they are on waiting lists for government funded services, with the average wait more than five years.  The survey also found that the promise of integrated, community-based employment is not being met.  In fact, 85 percent of families reported that their adult family members with I/DD are not employed at all.  Opportunities for inclusive education, a pre-requisite for employment, are also not being met.  Too few students are completing high school – in fact, 52 percent of families reported that their family member with I/DD left school without receiving a high school diploma.

“People with I/DD have a fundamental moral and civil right to be fully included in all aspects of society.  Every day, The Arc promotes and protects the human rights of people with I/DD and actively supports their full inclusion and participation in the community throughout their lifetime,” says Peter V. Berns, chief executive officer of The Arc and newly appointed member of President Barack Obama’s Committee for People with Intellectual Disabilities (May 2011). “Although we have made some progress as a nation over the last 50 years, our nation has an obligation to do much more.”

“Yet we are on the brink of taking giant steps backward, and the future is uncertain for these individuals and their families. The vast majority of individuals with I/DD live with their parents. So, when their parents can no longer emotionally or financially support them, who will? Without any concrete measures to protect these individuals and proposals to end Medicaid as we know it on the table in Washington, we have a train wreck waiting to happen.”

FINDS found more than 75 percent of families report problems accessing non-institutional community care, trained reliable homecare providers, services and resources.  Families are shouldering tremendous financial strain as they’ve had to assume the financial and day-to-day support of their loved ones; many have even had to quit their jobs to stay home and provide care.

FINDS also revealed:

  • 1 out of 5 families (20 percent) report that someone in the family had to quit a job to stay at home and support the needs of a family member.
  • More than 80 percent of families reported not having enough retirement savings for their future as a result of using personal funds to compensate for the lack of services available to their loved ones.
  • 62 percent of parents and caregivers don’t have a plan for where the person they support will live when the parent/caregiver gets older.

As a result of the report, The Arc is calling for more activism by people with I/DD and their families, launching a new effort to organize 1 million people to come out of the shadows and make their needs and concerns an issue in the 2012 elections.

To raise awareness surrounding the barriers those with I/DD face and how the organization can help individuals and families fully participate in society, The Arc has partnered with Lauren Potter, star of the hit FOX show “Glee.”  As a successful actress with Down syndrome who is achieving her dreams, Lauren represents the spirit of The Arc’s work.  Today, The Arc and Potter will kick off a public service announcement television campaign.

“I became involved with The Arc when I got the Image and Inclusion award last year.  I am happy to be able to help portray a positive image of people with intellectual and developmental disabilities.  I’m glad the Arc works to protect human rights of children and adults with intellectual and developmental disabilities,” says Potter.

The Arc “Achieve with Us” Contest
To encourage people with I/DD to share their stories of achievement, The Arc is conducting a national contest via their Facebook fan page.   Starting today until July 14, entrants can share a story and a photo highlighting the accomplishments of an individual with I/DD for the chance to receive a trip for two to Washington, D.C.  For more information about the “Achieve with Us” contest, please visit www.facebook.com/thearcus.

For more information, or to see additional survey results, please visit thearc.org.

About the FINDS Survey

The web-based FINDS survey was conducted from July 22, 2010, through October 31, 2010. The survey was completed by 4,962 caregivers of people with disabilities.  Families from all 50 states and Washington, DC completed the survey. 

The Arc Launches Dynamic New National Brand Identity

Washington, D.C. – The Arc, the largest organization advocating for and serving people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, FASD, cerebral palsy and other diagnoses, is changing its look and adopting a new visual identity. The Arc is joined in the launch of this rebranding initiative by state and local chapters representing more than 30 states.

“This is an exciting time in The Arc’s history,” said Peter V. Berns, CEO of The Arc. Our powerful, new, shared identify reflects the energy and the action of our organization as we work to transform the lives of people with I/DD.  This impactful and fresh identity will move us further in revitalizing The Arc – an organization that has been on the frontlines of advocacy and service for over 60 years –by harnessing the incredible power of those we serve.”

The Arc’s vibrant new logo and tagline communicate the organization’s commitment to promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes. The Arc’s logo is
emblematic of the organization’s embracing nature with the flowing “catalyst” icon; a burst of energy is symbolic of our support of independence. The new tagline, Achieve with us, conveys The Arc as a provider of opportunity, hope, growth and change.

The Arc’s new identity grew out of a lengthy, collaborative effort that began in spring 2008 and has involved literally thousands of The Arc’s volunteer and staff leaders, constituents and other stakeholders to create a visionary plan for the future: The Strategic Framework 2010-2019. A survey of chapters of The Arc demonstrated widespread support to rebrand and create a more compelling vision for The Arc.

The launch of The Arc’s new brand coincides with the commemoration of Developmental Disability Awareness Month in March. Nearly a quarter century ago, The Arc’s advocacy led to President Ronald Reagan officially proclaiming March to be Developmental Disabilities (DD) Awareness Month. Chapters of The Arc across the nation are celebrating DD Awareness Month with special events and activities. Over the past six decades, The Arc has championed groundbreaking legislation that has improved the lives of people with I/DD.

“There is tremendous energy and ‘buzz’ as we begin to implement The Arc’s new brand identity” said Mohan Mehra, Board President of The Arc. “This will help raise public awareness of The Arc and translate to greater support at both the local and national levels. I am especially invested in the new brand and have been involved since the start of the process. Having served as a business manager with Kraft Foods with experience in business strategy, marketing and sales I know that a new brand can make a real difference.”

The Arc selected CoreBrand, an award-winning branding firm, to design and execute the new identity led by Brand Director Jonathan Paisner.  “As a branding consultant, this was the rare opportunity to help discover and unleash a powerful brand simply waiting to be born,” Paisner said.  “A true collective voice –- one shared by and reflected in over 700 chapters – will certainly be a boon to fundraising, volunteerism and visibility in the corporate world. Yet the true impact of a greater national presence will ultimately bring all of these elements together to advance The Arc’s goals of inclusion, hope, opportunity and achievement.”

The look and feel of the new brand will advance further with the May 10, 2011 national announcement of The Arc’s FINDS (Family and Individual Needs for Disability Supports) survey results at the National Press Club in Washington, D.C.  The FINDS survey will yield a candid and current view on issues concerning the needs for disability supports across the lifespan. This unprecedented assessment of data from nearly 6,000 individuals will enable those in the field to better understand what services are available, what gaps exist and what new supports are needed.

Today, across the United States, the 700+ chapters of The Arc share common goals:

  • The Arc is embracing, determined and experienced in promoting and protecting the rights of people with I/DD;
  • The Arc provides key needed services and supports across the arc of a lifetime and across diagnoses, such as Down syndrome, autism and many other intellectual and developmental disabilities.
  • The Arc is banding together around the new and vigorous identity that embodies the energy and movement of The Arc to help people with I/DD feel empowered and included.

“We are thrilled,” Berns added, “that upon the launch today we will have more than 150 of The Arc’s state and local chapters simultaneously unveil The Arc’s new brand identity in communities across the country.  With close to 25% of chapters of The Arc on board already, and more chapters signing on daily, the successful implementation of our new brand strategy is well underway,” Berns explained.

The Arc’s Disability Survey Focuses On Military Families

Washington, DC – The Arc, a national organization that supports individuals with intellectual and developmental disabilities (I/DD) and their families is engaging military families connected to individuals with I/DD to determine their disability needs through a national survey. The Arc is partnering with the National Military Family Association (NFMA) and other military channels to distribute a special version of The Arc FINDS (Family and Individual Needs for Disability Supports) survey to military families who have a family member with a disability.

The Arc FINDS (Family and Individual Needs for Disability Supports) is a free, online survey designed to tap into the knowledge and perspectives of families and individuals with disabilities on issues which arise across an individual’s life span. FINDS has been in the field since late July and already has more than 4,500 respondents, which makes it one of the largest single collections of perspectives from individuals and families connected to intellectual and developmental disabilities in the history of the field. Results will provide greater understanding about what disability-related services and supports are being received currently, where gaps exist, and what new supports may be needed from the military family perspective.

“Reaching out to military families through The Arc FINDS survey increases the meaningful involvement of populations we serve in determining what services are provided and our success rate in delivering those services. We have much to gain from the perspective of military families when you consider the diversity of the force and the unique challenges these families face while serving our country,” said Peter V. Berns, CEO of The Arc.

Survey questions cover areas of advocacy, education, transition, employment, housing, community participation, civic engagement/voting, transportation, caregiving, and demographics. It is written to allow for both the perspective of individuals with I/DD, as well as their parents/caregivers. It also allows for the differences in service and supports required at different stages of life.

To access the online survey, go to: www.thearc.org and link to the survey “Military Families: Click Here.” Please direct questions to Ann Cameron Caldwell, Chief Research and Innovations Officer at Caldwell@thearc.org.

The Arc Launches National Disability Needs Survey

FINDSFamily and Individual Needs for Disability Supports

Washington, DC – As we pause to celebrate the 20th anniversary of the Americans with Disabilities Act (ADA), The Arc recognizes that there has been significant progress made on behalf of people with disabilities. There is more still to be done, however, and The Arc is initiating a national effort to tap into the knowledge and perspectives of individuals and families within the intellectual and developmental disabilities (I/DD) community.

Our goal is to assist the sector in determining needs for services and supports. This survey—The Arc FINDS (Family and Individual Needs for Disability Supports) —will enable those in the field to better understand what services are available, what gaps exist and what new supports are needed.

The Arc FINDS launches July 21 and will be accessible until September 1 to all families and individuals with I/DD, both in and outside of The Arc’s chapter network. Dissemination of the survey to a broad range of disability and caregiving networks across the country and throughout our allied organizations will maximize the survey’s reach and findings.

“The Arc FINDS will capture the perceptions of individuals with intellectual and developmental disabilities of all ages, as well as those of their families and caregivers. The results will provide
us with a much-needed candid and current view on issues concerning the needs for disability supports across the life span,” said Peter V. Berns, CEO of The Arc.

“We are committed to finding a meaningful way to involve the population we serve in determining the services provided and gauging the successful delivery of these services—just as any business would involve its consumer network through an open market-research style survey. We’re thrilled to be promoting FINDS in collaboration with other top disability organizations focused on those with intellectual and development disabilities,” Berns said.

Ann Cameron Caldwell, Chief Research and Innovations Officer for The Arc, is directing the survey and its evaluation. “The information gleaned from the survey will help identify—and document—nationally, by state and locally what families want in terms of needed services and supports. This information, including personal stories, will be valuable in informing and supporting ongoing program development, advocacy and policy work,” said Dr. Caldwell, who is the parent of a teenager with Down syndrome.

Questions are being asked in areas of advocacy, education, transition, employment, housing, community participation, civic engagement/voting, transportation, caregiving, and demographics. It is written to allow for both the perspective of individuals with I/DD, as well as their parents/caregivers. It also assumes for the differences in service and supports required at different stages of life.

Options are in place for respondents to contribute personal stories about their experiences with contact information to support advocacy efforts here in Washington. The vehicle for collection will be an online survey that respondents can link to electronically through The Arc’s website: www.thearc.org. There is no cost to participate and all responses will be confidential; it will take respondents about 30 minutes to complete the survey. The survey may also be found at: http://www.surveymonkey.com/s/TheArcFinds2010

This information will be shared initially at The Arc’s National Convention (November 3-6, 2010 in Orlando, Florida), as well as publicly on The Arc’s website.

If you have any questions, please contact Laura Hart, Director, Media Relations, at 202.534.3712 or at hart@thearc.org.